Bronch...to do or not to do

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mojorisen

Guest
thanks again for your feedback....ill know more in 6 weeks when we go back to test his pft again
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Elizabeth
 
S

stephen

Guest
mojorisen;

I've had a number of bronchoscope procedures. Some to verify where bleeding was coming from and some to see just what was down there.

A number of times, cultures grown from retrieved specimens showed "bugs" that were not evident in the crap I coughed up. This included the presence of MAI/MAC, which I eventually was treated for.

I would strongly suggest you ask whom ever is actually doing the procedure how many they have previously done. I would want someone has done at least several hundred.

Also, the procedure can/does stir up the muck down there and some bleeding and fever is very common for several days following it.

Good luck with whatever you decide.
 
H

HuntersmomTBM

New member
Elizabeth,

First, I am so sorry that anyone here would talk to you in that matter. It's digusting!

Second, my son has had a flexible and a rigid bronchoscope. He also has Tracheobronchomalacia (floppy airway) along with Innominate Artery Compression (an artery grew wrong direction and compress' his trachea). We would have never found this out without a scope.

Third, Believe in your gut. You are doing the very for your son.

Are you on Facebook? I find CF Momma's to be very informative and caring
.

Wishing you the best
Colleen
 
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HuntersmomTBM

New member
Elizabeth,

I read your posts. You mention that your son has Asthma and had little to no help after Xopenex. Tracheomalacia r Tracheobronchomalacia has been found to be mis-diagnosed as Asthma. Albuterol and Xopenex has more bronchodilatorshttps://www.google.com/search?clien...a=X&ei=DAxAU9vDEYHQsQSfxIGQAQ&ved=0CCUQvwUoAA (aka muscle relaxers) in them. Both can make some Malacia worse. My son was originally diagnosed with Tracheomalacia it wasn't until he had a sedated scope at 10 they found it was TBM with compression. AT next PFT ask RT if you can try Atrovent -less Bronchodilators in it. It made the world of difference for my son. I hope this helps.
 
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Hopeandlove

New member
Hi Elizabeth,

My husband has cf and every few years he gets a bronch. It cleans him out really good and they find the right bacteria to treat. He has always recovered fine from them. He too has a hard time coughing stuff up and after a few rounds of failed treatments they do a bronch. I would recommend doing it as it has helped him get better quicker. However, I know it is a hard decision for you and frustrating as doctors are telling you different things. I know here in columbus the doctors do bronchs for cf patients if it makes you feel better. Either way, you should know we all think you are an amazing mother for asking questions. :) praying for your little guy and hoping this treatment that he is on now works. :)
 
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mojorisen

Guest
wow! thank you all for the support. I feel so much better reading these. Aidan has had a bronch in the past. so I am familiar with it, I guess that's a good thing? like I said I just have that gut feeling that there is something else going on in his lungs and while I know the switch to symbicort is a good move for his asthma, I just know when we go back in either the 6 week test or the 3 month clinic his pft's are gona be down again. unfortunately with this disease its a lot of trial and error...gggrrrrr!

Colleen, thank you for your kind words. yes he has always had the asthma with his cf. and sometimes its an issue, but very rarely. he does respond well to the xoponex. it was just when he did his pft test. they do the test first with out it then do it with it. and since the first test without it his levels were in the low 70's, then did the xoponex and it raised to the 80's. she thinks its asthma related. so that's why we took him off advair and is now on symbicort. I use the xoponex as a resue inhaler also for Aidan when he really beating up his lungs all day especially in the summer when it nasty hot and all he does is run. and it works immediately. thanks for the tips and advise. yes I am on fb. im only friends with one older lady who herself has cf. im not friends with any cf moms. I don't know how to find other cf moms on fb. and the groups on fb scare me. so if you know any good groups on fb I would like to know them. you can also send me friend request...Elizabeth Vaspoli-Marriott.
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Elizabeth
 
B

BiancasMom

New member
My daughter is almost 21 now and had to have several bronch's done in her years with CF. She just had one recently to help determine if there are any new bacteria or mold in her lungs causing problems. Good news is it was all the same stuff she has always had, bad news is now they have to figure out why the drugs are not working probably the junk has gotten resistant to them. It is not as bad to get the procedure as to not know what is really going on. How can you make an informed decision on treatment without knowing what is really in the lungs causing the issues? I'd rather know so I can know for my peace of mind if Iam doing something wrong or not and what is causing the problems. She has Pseudomonas, MRSA, Staph and ABPA all in her lungs so it is a tough fight ahead since now she may be resistant to the antibiotics. Good luck, I hope it helps. :)
 
B

BiancasMom

New member
forgot to say I am on facebook as well Delilah Smith Duluth, GA and my daughter lives on facebook Bianca Reyes...she is very good about answering questions and she has used all the same drugs your son has.
 
R

RobinB29

New member
Blocking someone.

To block someone just go to one of their hateful ridiculous comments and click on their user name, it will take you to their user profile and "Block" should be an option on a menu on the left hand side. I did this and no longer am subjected to a certain elderly "gentleman's" posts.... :)
 
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HuntersmomTBM

New member
I just sent a friend request to you Elizabeth and to Delilah Smith Duluth. Some good can come from bad :) Anyone else nice wish to join us. I am on CF Momma's it is wonderful, highly recommend it.
 
W

windex125

Guest
I have to say that broch's are needed occassionally, sure they are risky and yes they stir things up but I have had a few and they have only helped with diagnosing what was growing and a better plan of action. Good Luck Pat/CF-59






ff-59
 
D

Dhobs

Guest
My daughter had both a flexible and rigid bronch when she was five. They had found a partially collapsed lung and after squirting meds in through the flexible bronch and getting no results, they went to a rigid bronch and sucked out a plug. After that things got better much quicker.

She's seven now and currently in the hospital for a bad pneumonia. If she doesn't consistently improve, she'll have another bronch.
 
W

windex125

Guest
I think its very important to bronc. every fewy ears if nec. it gives a better indication on what yr. growing. When we test our sputum it can come from any part of the lung, I think that is why we get so many different bacteria's and speaking frm someone that hs grown MAC for more than 10yrs Which we only treated with a cocktail one time. I also have severe bronchiestasis. Sure it sirs things up for a bit, but I think it's important to have a better look. Pat-CF/59
 
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athletixbc

New member
From what I understand the only time that a bronch is contraindicated is post transplant when the patient carries the b. cepacia complex. If your son doesn't cough up any sputum to test, then it seems to me that a bronch is the best way to get a sample of what is growing inside his lungs. A buccal swab just won't do the job to detect infection that is down in the base of the lungs.
 
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sierradavis

New member
We had a bronch done on my daughter when she was about 6 months...she had a lot going on at the time as well. They didn't find any bacteria but they were able to get a lot of mucus out when they were doing the bronch. They also found that she has floppy airway which was causing her milk to get in the lungs and cause infection. We were worried about having it done but at the end it was a great decision bc we found out a lot bc of it! Our CF doctor didn't want to do it unless it was absolutely necessary and when she got to that point we trusted her and went with it! Aubrey handled it well except for coming off the drugs! She was not a happy camper feeling like that!!
 
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azdesertrat

New member
I've had many bronchs. So many, I can't remember them all!
We did have a negative consequence from one bronch, but all-in-all, they have been a very necessary tool for diagnosis & maintenance.
Like any surgical procedure, there is some risk involved.
Honestly, I wouldn't worry too much; as long as you have a competent doctor performing the procedure.
Do you trust your son's CF team?
Feel free to discuss any & all apprehensions about the bronch with your son's doctors.
Remember, the only dumb question is the one you didn't ask.
Best of luck to you & your son, I hope everything turns out for the best.
 
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